Bizarre results, please help!

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CLD
Posts: 204
Joined: Fri Mar 27, 2015 7:16 pm

Bizarre results, please help!

Postby CLD » Mon Jul 09, 2018 8:34 am

I had the weekend to digest my DH PET scan results, now I have more questions than answers. His Dr is on vacation until July 19, so I would love anyone to weigh in with their thoughts, or suggestions. First, a brief background. In Feb, DH started noticing some shortness of breath upon exertion. Because his brother died from lung cancer and due to his own history, his Dr scanned him right away. Normal scan, so he was sent to pulmonologist who could find nothing and suggested a 3 month rescan. This was done in conjunction with his 6 month pelvic scan. DH got a call the day after the scan that they were going to start him on an antibiotic because his chest CT was suggestive of an infection. At his oncology appointment after the scan, the dr reported that there were *tiny micrinodular densities* in the lung which the radiologist suggested was an infection but of course, due to history, could not rule out metastatic disease. I asked the oncologist if she was *freaking out* and she said *no, not at all. The radiologists have to cover their buts too.* in fact, she was so sure it wasn't cancer, she didn't schedule a followup to discuss The PET results. The next day, DH had a followup with pulmonologist who reiterated oncologists opinion, and said in no way did this look like metastatic spread to the lungs or a new lung cancer, but that he couldnt find a cause for his shortness of breath or cough. He rescheduled 2 month follow up. DH had PET scan that Friday. After a week of waiting for the results, a nurse called Friday at 430 and told me (paraphrasing) *The PET showed SUV uptake of 5.4 in a para aortic lymph node by the right kidney, and T11(spine) and his femur showed an uptake of 2.3. There was no activity in his lungs. We will try to biopsy lymph nodes, but if we can't get them, we will try to biopsy the bone. If not, the dr may just want to start him on Irinitecan. This is a very bizarre pattern of spread for colon cancer. This is inoperable and terminal.* I spent some time reading about PET scans this weekend. Apparently false positives can happen with infection, antibiotic use, and inflammation. He was being treated for a suspected infection with a strong antibiotic which he finished the day before his scan. He also had an accident years ago where he broke his back and many other bones, which could be why the bones are lighting up. Anyhow, it appears to me that there is enough evidence that this is possibly a false positive (Did I mention his CEA is 1...yes, one) or not colon cancer, perhaps a different cancer. I read that the median CEA with confirmed bone spread is 147.5. We keep hearing *this isn't acting like colon cancer*. So are they trying to put a square peg in a round hole? Also, say it is cancer in the nodes, he wants pathological confirmation of bone spread, because that spread would be treatment limiting. There is no way he will begin chemo again without pathological confirmation of cancer, or if they can't biopsy, he'd rather rescan and see if there is an increase in node size, than consider chemo. The biopsy should be scheduled this week after review by an interventional radiologist. Again, if anyone can share any thoughts, suggestions, or questions for Dr, I would appreciate it.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes BRAF / KRAS negative
Folfiri and Avastin Aug 2018
CEA:2.9 at recurrence

Achilles Torn
Posts: 109
Joined: Fri Dec 16, 2016 2:41 pm

Re: Bizarre results, please help!

Postby Achilles Torn » Mon Jul 09, 2018 4:08 pm

Hi CLD,

Sorry to hear about the possible bad news this scan has brought. While it does seem rare, lymph node and bone spread is not unheard of and there are a few examples from this board. That being said you are right that PET scans can show false positives especially when there are signs of infection. Unfortunately lymph nodes seem difficult to biopsy and if one can't be done a rescan might be the way to go.

If it is cancer there are still many treatment options available and more being developed than ever before. I know someone personally who has been ticking along for years with mets to lymph nodes, spine and lungs.


lets hope its not cancer, but even if it is it doesn't mean its the end.

Hope that helps
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

tater
Posts: 74
Joined: Wed Jul 19, 2017 5:53 pm

Re: Bizarre results, please help!

Postby tater » Tue Jul 10, 2018 5:12 pm

You say that his CEA is 1.0 currently, was his CEA higher at on time? Has it been a good indicator in the past?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

CLD
Posts: 204
Joined: Fri Mar 27, 2015 7:16 pm

Re: Bizarre results, please help!

Postby CLD » Tue Jul 10, 2018 6:09 pm

His CEA was 5 at diagnosis. One is an all time low. DH was scheduled today for a bone biopsy on July 20. It is frustrating to us that they cannot do the nodes as well, due to their risky location. DH was in an accident 7 years ago and broke his back in 2 places, his knee and both ankles. Our concern is, the bones might be lighting up due to inflammation, while the nodes might be positive due to cancer. I'm very eager to finally have an appointment so his Dr can explain this all to us!
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes BRAF / KRAS negative
Folfiri and Avastin Aug 2018
CEA:2.9 at recurrence


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